[This Transcript is Unedited]
Hubert H. Humphrey Building
200 Independence Avenue, SW
Washington, D.C. 20201
DR. COHN: Well, good morning. Happy wintry wonderland outside and, of course, Happy Valentine's Day. I want to call this meeting to order. This is the second day of meetings of National Committee on Vital and Health Statistics. The committee as you all know, is the main public advisory committee to the U.S. Department of Health and Human Services on national health information policy.
I am Simon Cohn. I am associate executive director for Kaiser Permanente and chair of the committee. I want to welcome committee members, HHS staff and others here in person. I don't believe we are quite on the Internet, but we should be shortly. As you all discovered yesterday, especially our new members, you need to speak clearly and into the microphone. These are unusually difficult microphones in that respect.
With that, let's have introductions around the table and then around the room. For those on the National Committee, I would ask if you have any conflicts of interest relating to any of the issues coming before us today, would you so publicly note during your introductions.
I want to begin by observing that I have no conflicts of interest.
I will do introductions and then we will talk about the agenda for the morning, knowing that as previously mentioned, we will be adjourning by 12:00 noon and that there will be a hearing of the Population Subcommittee planned for this afternoon.
Margaret.
MS. GREENBERG: Good morning. I am Marjorie Greenberg from the National Center for Health Statistics, CDC and executive secretary for the committee.
MR. ROTHSTEIN: I am Mark Rothstein, University of Louisville, School of Medicine, member of the committee. No conflicts.
DR. CARR: Justine Carr, Beth Israel Deaconess Medical Center, member of the committee, no conflicts.
MR. REYNOLDS: Harry Reynolds, Blue Cross Blue Shield of North Carolina, member of the committee and no conflicts.
DR. WARREN: Judy Warren, University of Kansas School of Nursing, member of the committee. No conflicts.
MR. LAND: Garland Land, NAPHSIS, member of the committee. No conflicts.
DR. VIGILANTE: Kevin Vigilante, Booz-Allen & Hamilton, member of the committee, no conflicts.
DR. FRANCIS: Leslie Francis, University of Utah, member of the committee and no conflicts.
DR. STEUERLE: I am Gene Steuerle, The Urban Institute, member of the committee, no conflicts.
DR. SCANLON: Bill Scanlon, Health Policy R&D, member of the committee. No conflicts.
DR. GREEN: Larry Green, University of Colorado, member of the committee. No conflicts.
DR. OVERHAGE: Marc Overhage, Indiana University and Indiana Health Information Exchange, member of the committee and no conflicts.
DR. STEINDEL: Steve Steindel, Centers for Disease Control and Prevention, liaison to the full committee.
MR. BLAIR: Jeff Blair, Lovelace Clinic Foundation, member of the committee. No conflicts.
MR. SCANLON: Good morning. I am Jim Scanlon from the HHS Office of Planning and Evaluation and I am the executive staff director for the full committee.
DR. COHN: Let's talk about the agenda for this meeting. Actually, will those on the phone please introduce themselves.
DR. STEINWACHS: Don Steinwachs, Johns Hopkins University, member of the committee. No conflicts.
DR. COHN: Thank you for joining us.
DR. FITZMAURICE: Michael Fitzmaurice, Agency for Healthcare Research and Quality, liaison for the committee.
MR. HOUSTON: John Houston, University of Pittsburgh Medical Center, member of the committee. No conflicts.
MS. MC CALL: Carol McCall, Humana, member of the committee. No conflicts.
DR. TANG: Paul Tang, Palo Alto Medical Foundation, member of the committee. No conflict.
DR. COHN: I guess I should ask about John Paul exactly, whether he has made it to Pittsburgh or whether he is calling in from Reagan Airport.
It has been a good morning and I think we are all recovering from a little bit of snow in Washington, D.C.
Of course, I should comment that this has been somewhat exceptional meeting in the sense that we have had to adjourn early yesterday because of the threat of weather and then actually over the night there actually was some weather. So, the new things are relatively slushy and obviously, we will appreciate everybody's ability to make it here, as well as those calling in on the phone.
I do think, in terms of the agenda, and we are going to change the agenda around a little bit. I do want to make sure that we have an opportunity to talk about issues and issue papers that are likely to be coming up over the next couple of months.
I would suggest that includes a topic that we didn't get to yesterday, which is this discussion paper on data linkages that I would like Gene Steuerle to talk about a little bit just because I think we should be expecting that to be coming forward, at least certain aspects of it potentially is a letter for full committee discussion either sometime between now and probably our June meeting.
I am also going to ask Harry Reynolds and Jeff Blair to at least briefly discuss an early draft of a letter that was supposed to be discussed at the Standards and Security Subcommittee, but, of course, as we know, that was cancelled. So, this has not been vetted within a subcommittee yet, but once again, it is likely to come up as an issue in the relatively near future.
Then we will reflect a little bit on the HIPAA annual report. Now, my own view, and we will discuss this sort of as the morning goes on before we adjourn, is there will likely be a need for (a) some conference calls by subcommittees and workgroups, as remember, Populations, Privacy and Standards and Security and the NHII workgroup, all had their subcommittee and workgroup meetings cancelled.
So, this will have to be taken care of by the phone. But I think there is also going to be a need for a full committee conference call between now and June to deal likely with a couple of the letters we are talking about, as well as potentially the HIPAA report. So, I mean I would just suggest that. I mean, the good news, well, actually, for better or for worse we obviously didn't have -- haven't had a full committee meeting and will obviously be trying to make up for that by a conference call and I hope we have your concurrence on that before we adjourn today.
So, we will talk about these three issues. I would still obviously like if there is time permitting, to talk a little bit about the international activities, but we will sort of see how that all goes.
I should also comment that between now and the next meeting of the full committee face to face, there will be a meeting of the Executive Subcommittee. We will be talking a lot about strategy issues and hopefully revisiting the strategic retreat that occurred in June and we will be bringing to the committee discussion in June sort of some additional thoughts and compilations, I think, based on our experiences of the last nine months.
So, if we don't make it to a full discussion of cross cutting issues today, be aware that we will be bringing that forward in June.
So, with that, Gene, I actually would like to start out with you talking some about your -- the data linkages thought paper you had and maybe you can brief the committee on it, as well as give us some ideas about where you think that this is going and I presume there is likely to be a letter coming forward at some point from the Population Subcommittee.
Agenda Item: Data Linkage Issues
DR. STEUERLE: I would encourage other members of the subcommittee also to chip in and I know Don is on the line here.
We held a Data Linkages meeting, which I think was quite productive. We not only had representatives from many of the health communities, such as AHRQ or ASPE or CMS or NCHS. So, we had representatives from many, many of the parts of HHS, the health research community, but we also had representatives from Census and IRS and Social Security and the Veterans Administration.
This is one of these areas where people sense -- you could sense from the dynamics of the meeting that people felt a tremendous potential if we could figure out how to work together and combine and use these data sets. At the same time, sort of a sense of frustration often with how do we really make it happen. Then part of the purpose of the hearing was not only to try to identify a number of opportunities, but actually to try to figure out how we can break through some of the barriers.
I think anyone who has worked in a bureaucracy and has had their own set of assignments and sees other things that aren't being done knows this feeling, especially if that other assignment is not really part and parcel of anyone's assignment within the agency itself.
Among the barriers that people talk about, Census is actually doing probably I would say the most significant job in terms of actually trying to create a data linkage center, but, of course, then they also don't have access to non-health data. HHS can do some data linkage within itself but often they use it to really merge their data with other data such as social security data or census data and then, of course, there are all the issues having to do with whether these linkages do or do not improve your information.
For instance, there is a very large gap in the estimates of the Census Bureau and Medicaid in terms of Medicaid participation. It would be nice to know what those differences are in part because it is often with the Census data that we are able to identify the characteristics of the people that are getting Medicaid or they are not getting it. When you have these types of gaps, it creates a real gap, not only in terms of our knowledge of what is going on, but actually how to administer the programs.
So, where do we think we might head? Well, the recommendations that we are thinking about putting forward, we listed seven. A couple of them are somewhat innocuous, like commend the Center for Medicare and Medicaid Services for its forward thinking. Of course, we are going to do that. But, in fact, I think they are actually in particular within the center and also within Jim's office actually thinking very dynamically on this.
I should say, by the way, the draft of a summary of the workshop was actually prepared by Jim's staff and they really did a nice job of pulling it together.
A second recommendation would obviously be to encourage continued research to improve technologies. Let me list these and I am going to come back to a particular issue. A third one is to more formally inventory HHS program data to more formally try to identify where administrative data systems could be beneficially linked, either with survey data or with other administrative data.
A fourth one is to try to set department-wide standards for linking HHS administrative data systems. The reason for this recommendation came in part from the discussion at the hearing that every time someone wanted to go through a particular data linkage, they often had to go through a different set of protocols. There weren't these standards, not only within HHS but sometimes across agencies as opposed to just having a common form, a common way of trying to get through not just the standards but then getting through the legal questions of confidentiality.
A fifth one is to look for ways to reduce time to get the permission. This is, again trying to simplify or streamline the enormous permission efforts that go into trying to link data sets. It really can be mind boggling, so much so that someone trying to undertake a project often drops out of doing it.
More formally, we were thinking about suggesting a program for conducting research on the quality of linked data sets because linked data sets, while they improve our information also have quality issues.
And then the final one is to explore ways of working with other agencies, such as OMB, Census and Social Security, among the ones I have mentioned.
One of the issues here, as I say, is how to more formalize this issue within the department itself so that it is not just a second or a third or a fourth thing someone would like to do as part of their job, which tends to, I think, deter a lot of the potential.
The difficulty for us is while we might have people who came to us and say, gee, I would really like to do this particular data linkage to do this particular research project, that is at a level of detail that probably this committee can't get into, but yet that is really the heart of the matter is identifying these items and then trying to figure out some way to allow it to happen.
I should say also -- and I probably should have begun with this -- is with linkages there is an enormous potential, not only for improving information, but for doing it very, very efficiently because when you are talking about linking data sets, you are talking about linking information for which the cost of retrieval and collection has already been paid. In the case of surveys, you actually put a lot of money into the collection with its administrative data. If you can link those and make use of them as opposed to survey data, you don't have to pay to go back out and collect information. People in some sense or administrators have already filed a tremendous amount of information, but often without thought as to how it is going to be used by the research community.
So, the potential for saving as well as efficiency is enormous. So, what would we -- what are we exploring doing as next steps? Again, this is outlined in a draft that Jim's staff prepared, but one is do we prepare a memorandum to the Secretary and if so, how exactly do we make our summary and our recommendations? It seems like outside of the commending of people, which is nice, we need to figure out some way of perhaps formally trying to jump start or push forward this agenda.
Another step would be examining accessing data for policy and research purposes and whether we want to go further into the -- there are various federal requirements of protecting and accessing data systems. This actually gets into privacy and confidentiality issues, by the way, as well. Mark and I briefly talked about whether we need to have some discussion there.
Areas of research include are there ways to create synthetic data? There are ways of taking data sets, combining them together, say, for instance, merging three or four records together into a single record and determining whether this type of synthetic data is useful for -- and sometimes it is useful, sometimes it is not. That, again, takes research.
An issue came up, Jim raised it yesterday, with research centers is can we figure out a way to make better use of research centers as a way to get outside access to data. We can talk the world about trying to combine data together, but if users can't really get access to it, you can spend moderate or a fair amount of resources pulling together the data and then no one really is there to be able to use it.
Somehow or other we need to really cope with this issue of being able to get researchers using access to data. By the way, it was a major topic raised by almost all the participants at the panel is that we often think of really good things to do but then we really can't get the researchers to do it. Of course, in many cases, we being a researcher here, a researcher there, haven't thought of what another researcher on the outside might think to do. I mean, just think of trying to corral some of the dissertation writers in a variety of medical and social science fields to be able to use these data. Right now, they have a very, very tough time getting in to use it. If they do get in, it is often months or years in the process.
So, can a research center deal with this issue? That is a very important issue.
Then there are other issues, such as a little bit more of a flyer, but, you know, can we make better use of Internet systems? You know, we claim that confidentiality prevents us from doing a great deal of things, but the Defense Department, which has to do a few things on time without waiting for months to get approval, has a number of Internet systems for accessing highly secret information and are there ways we can learn from that.
Finally, we need some rules for tabulating sensitive data, as opposed to just saying we can't do anything with the data. So, these are the things we are exploring doing as the next step, possibly putting in a memorandum to the Secretary. As you might guess, a great deal of this depends on discussions with offices like Jim's because in many ways what we are trying to do is really empower the people within the Department themselves to be able to do much more here, but by giving it a little higher profile, we are hoping we can move that agenda forward.
So, I don't know whether Don on line or Bill or Kevin, who else -- Garland is joining but I think he missed the meeting, but who -- anybody else from the subcommittee want to jump in here?
DR. COHN: Don, do you have some comments?
DR. STEINWACHS: I think, particularly, I understand, even within Jim Scanlon's shop that just aren't done because it takes too long or it is too hard to put the data together to get the right kind of information for policy. So, this is both an issue internal to the capacity of government to do its job well, as well as the issue for the opportunity of the research community to really give us insights that we don't have now. So, access and timeliness are really the two big issues and I think what Gene did sort of summarized all the pieces that we looked at and I think it needs a way to pull that together into a recommendation.
DR. COHN: Kevin.
DR. VIGILANTE: The only thing I would add is that there are interesting parallels, I think, between the hearing on linkages and the hearings we are going to have on the data required for surge capacity because after all, you know, there is data already being collected by a variety of agencies and entities that has gaps, duplications, but that could benefit from linking -- and the hypothesis is that linkages in that environment would also bring benefit in terms of getting more bang for the buck, so to speak.
So, I think we bring this, you know, I think it was very instructive and I think bringing that perspective into this preparedness environment will also be a useful perspective to maintain.
MR. SCANLON: Just a couple things. I think this is a good area to look at and I think if we can find -- the committee can find a way to make some good recommendations, it would really be very helpful to us because we struggle -- as Gene said, we struggle with this all the time. My office has -- we have probably sponsored a fair amount of this. We have linked survey data, social trivia data to Medicare data all in one and it really is a -- there are so many obstacles to overcome. You are worn out by the time you do it.
Then you spend so much time just on that part of it that the analytic part of it, I think, just doesn't get enough attention. But the other thing I was going to say is the -- in a way the statistical system and the research system has kind of responded to what the capabilities were over the years. First, it was, you know, the answer was published reports and tables and analyses. Then there was an additional element of public use data tapes where you had non-identifiable micro level data for researchers, as well.
Then we moved to this web-based and we had this on the Data Council web site as well, well, on our statistics gateware, where you can request public use data files, but you can also create your own tables or do your own analyses if the agency has them on its web site.
Then the research data centers were sort of the next development, where under protected circumstances, researchers and others could get access to data that would otherwise have to be identifiable and the agencies couldn't release that. So, in other words, you specify what analyses or what tables you would like to have, but you never as a researcher walk away with any identifiable data. That is kind of where we are now.
I really think we need another step beyond that now. I think there is some other -- maybe that is the way of thinking ahead. I mean, the committee has always been sort of in the position of leap-frogging in a way, like with HEALTH NT(?) and other things, public health data. The research data centers, they fit their freely fitted niche. They are sort of boutique kinds of operations. You are probably not going to have many dissertation students doing this because it takes a lot of effort--it just takes a lot of effort.
But if the committee could think of some ways to
-- what would the next generation look like of an analytic center that could protect data, but at the same time link data, at the same time just make it a little easier. I think we are having -- we had to cancel today at our HHS Internal Data Council today, for example, we were going to be reviewing the HHS agencies data center experience and CMS, AHRQ, NCHS and SAMHSA and we sort of have pieces of these in other agencies as well. You know, they fit. They clearly -- they are popular and they fit certain needs, but they are fairly intensive and in some cases you literally have to be on premises. Not many of them have remote access. Again, this is a balance of privacy versus data access.
Any way the committee could help us there would be helpful. Then as a corollary, in our office, we are looking at this interest, not just linked data, but how can we improve -- we always have challenges of making the best use of the data we already have and we clearly don't. I mean, clearly, you are limited by resources and various other things.
Then there is the other stuff of what data does no one have and that is always the place where we are looking for new investment or redirecting investment and so on. Many of these are in the nature of improving access to data we already have. So, we are looking at -- we are interviewing members of the policy community, if you will, folks who are not statisticians and researchers, but who are kind of the just the policy researchers or the decision-makers or the staff to those folks, who are usually the gatekeepers, in terms of how do they use data. What do they look for?
We have a few of them right here, by the way. But how do they use data? What do they find? How do they approach it? Which of our data do they find are the most useful and most of all, what would they think would be ways of improving that. So, I think this could all tie together really.
DR. SCANLON: I won't repeat the themes, the real potential here and the fact that we haven't utilized it completely and there is a real interest in doing that. But I just wanted to add this also turns out it is an area where there is a strong sort of overlap between the Board of Scientific Counselors and our interest and we have had conversations. Debbie Jackson went to attend their meetings in New York in January. We had a couple of conference calls with members of the board and John and I are going to be attending the meeting in April. Their interest is in what we have worked on in the Data Linkages Workshop, as well as being very particular in sort of the issue of how do we get better access to the data.
The research centers and what niche they fill and sort of what -- which niche they don't fill has been a focus that this is something that we will pursue, as well as I think it is the start of a much stronger interaction between NCVHS and the board in the sense that we have got a common interest through the Population Subcommittee in data for the 21st Century. They are going through review of each one NCHS sort of programs. They are going to be sharing those with us and I think that is both sort of the issue of kind of what is going on currently in NCHS, how does it relate to data needs for the 21st Century, as well as how does it relate to the data linkages issue in terms of always maximizing the potential that we could of the NCHS sort of capacity.
DR. STEUERLE: If I could just add one footnote here, too.
There are structural issues here involved. One of them is, of course, the legal issue, whether there are legal barriers and whether there are actually policy recommendations that need to be made. For instance, you know, just simply allowing, since this is a center you do it or whether HHS has one allowing some of these linkages to take place across agencies, that is still not very clear.
I don't know how far we want to go into looking at that. The other structural issue, I think, is it goes back to this accountability and responsibility. In some sense nobody is really accountable or responsible for making it happen. If I can think back to NHII discussion, you know, eventually you wanted to have a national core data because you -- not just simply because you want somebody to coordinate things. You wanted somebody whose success or failure would be measured by whether he could advance that ball.
This particular case where, for instance, if you send something to say privacy lawyers, they may say, you know, all their incentives are to say no because in some sense -- don't get me wrong -- because if you say yes and something wrong happens, you get blamed but if you say no, it is not possible under the law, no one is really going to blame you. You are interpreting the law.
So, the question is -- I am not saying there aren't people -- don't get me wrong. Their people there are legal experts I am sure within HHS, who very much try to advance the ball because they care about it, but it is not clear who has responsibility for saying, okay, do we move -- is it -- forward and the ability to improve health outcomes with better information is extraordinary here.
I mean, we are not really just talking about some narrow researcher's agenda. There is just extraordinary potential here.
DR. COHN: Gene, I had no idea you had spent so much time with lawyers, but --
DR. STEUERLE: It didn't take much time. I was with Treasury and IRS for 15 years.
DR. COHN: Leslie, you had a comment.
DR. FRANCIS: This isn't a legal point at all. I just wanted to point out that I don't know whether you have thought about this and it is probably way down the line but there are some state agencies in addition to research centers that have some very good data sets that it might be interesting to think about linking.
MR. REYNOLDS: Gene, for those of us who aren't as close to this, what kind of data are you guys talking about? What data are you trying to link together?
DR. STEUERLE: Well, almost everyone that we talked to had a different idea. I mean, actually part of my own motivation was because I had been very interested, say, in Medicare data linked with social security data, which would allow me to measure lifetime earnings and who was getting what Medicare benefits, which is a much better than annual income. That would be an example. There are other actual health data, which is health outcomes or if you could actually measure health outcomes, you could -- I am probably remembering my own anecdotes and there are 30 others from the committee.
The President recently produced a major change in the taxation of health benefits of people and yet we need better linkages of the health insurance that people are receiving with their actual status to be able to predict who wins or who loses from those types of things.
DR. SCANLON: Some of the linkages have been surveys either done by NCHS or done by CMS and between the survey respondents' information and their Medicare claims and this really enhances the power of that survey in terms of understanding what is the experience of these people.
DR. STEUERLE: The health outcomes of Census data so you can really get a very good socioeconomic view of who is getting what or not getting what.
DR. COHN: Larry.
DR. GREEN: Has the subcommittee heard anything or thought about how data linkage connects to community-based participatory research?
DR. STEUERLE: I don't think we had any witnesses on that. There is nobody who actually touched on that, but clearly relevant.
DR. SCANLON: Actually, I guess, one of the things that was touched on is the barrier that is created when one tries to look at communities or sort of smaller geographic areas, that the issues of confidentiality and privacy become even more profound when you start to subdivide the country. This is a problem because there is the issue of community. There is the issue of markets. If you are an economist, how do markets differ and how do those influence the experience that people have are critical and, yet, when we talk about creating a data set that may have wider availability, we end up stripping out all kinds of this type of information in order to protect the confidentiality.
DR. GREEN: It seems to me, as a newcomer here, that community-based participatory research is trying to emerge in the United States. It is a 50 year old concept. It is a proven concept. There is a great deal of evidence that supports that it is a way to actually achieve public health improvements at the community level. You know, you don't save the world with it. You just save your town.
That specificity is its great, great strength, plus the fact that it is research that from the initiation of it is designed for action at a community level. What I am hearing from the folks in Africa, Australia, Canada and the U.S. that work this territory is that they see that they are, particularly in the United States, awash in data from these large data sets that are unlinked. We do run into the problems Bill just mentioned when you do move to a particular market or a particular geopolitical unit.
But they know that you have data for their citizens, their people there. I think one of the first ones Gene made was how expensive it is and how much we spend on getting these data collected. From a public perspective, if the government has these data and we need them to answer questions that at a community level we would like to take action on, one of our greatest needs is to measure baseline, do something, initiate a program and remeasure it.
What I am hearing is that it cannot afford that cost that they are wondering if there aren't some systemic solutions, very much like what I just heard, that might allow at least at a state level and in some instances when you look at Census, you could drive it all the way to block group level for some of these areas.
I think they are looking for help. So, the point I am driving at, if this hasn't been connected into this subcommittee's thinking, it is possible in our mission to actually look for ways to promote public health and the public good. But this is actually potentially very important and we might have use cases, many, multiple use cases spring up from around the country that would move away from just being the nerdy-headed researchers like me, that are prepared to go to the trouble to arrange the RESDAC(?) visit and to do all that, but we just got school teachers and principals and local businessmen that are really going to come to the table and talk about what they need to do to make their town healthier and they are prepared to measure it. They would like to work with somebody on this, but they really can't get there.
This use for these data might really put energy into this linkage. And you may think that is totally crazy, too.
DR. COHN: Larry, I am glad that you are joining the Population Subcommittee.
DR. GREEN: [Just for] advertising, I just realized that for people listening, my name is Larry Green and Lawrence W. Green really has authored a great deal of literature about community-based participatory research. I want to give him due credit. Just because I have his name, I am not that guy. There is another Larry Green that really is a driving force for community-based participatory research and that is not me.
DR. HOUSTON: Did he publish the article two weeks ago in JAMA? Who was that? Was that him?
DR. GREEN: That was not me. That was him.
MS. GREENBERG: I think he was also a member -- he was a former member of the committee, the other Larry --
PARTICIPANT: And the CDC.
MS. GREENBERG: I wanted to mention kind of picking up a thread from yesterday that another major type of linkages that goes on is -- I mean it is the ultimate health outcome with death records and there is the National Death Index is used extensively to link both by researchers who are trying to see whether their subjects are still alive or not and also in longitudinal studies, et cetera, and then the linked birth and death files, such kind of again reinforces the importance of having the 12 months worth and full collection of these data to -- because of these various linkage purposes.
MS. MC CALL: I would also add -- this is Carol McCall -- I think that there are a lot of consistent themes with what we have been talking about and what is needed for the research community with what is happening in the business community. Again, everybody is kind of -- we have oceans of data and it is raining, right? So, the issue is not going to get any easier. What I have been doing here in my work at Humana, again, with all the research that we do on data, have been tapping into some of the consultancies. Gardiner(?) is an example.
Looking at where the whole world of what in business is called business intelligence and where that is going and there is a whole driving and emerging force to kind of take those types of capabilities to the next level strategically. What I find is that there are a lot of common themes and Gardiner has a lot to say as do some other of these, you know, experts in this area that around the data that everybody is dealing with the same issue about how you cross lock data and they have some very good things to say about essentially what the governorship, the stewardship that very important to start with reference model, you know.
So, I don't think that the desire is unique to business. It is not unique to some of the research we are talking about here but some of the problems are very much in common that I find and that there are also some new ways that are emerging to begin to resolve some of the problems so that those can become much more of a mesh. There are things about what it means to actually harmonize some of that at a meta data level, new ways of dealing with ontologies and taxonomies, which is really what makes us able to go from, you know, kind of data island, from one to another.
So, as we go into this, I think it might be worth while to look at how some of those problems are being solved in industry and some of the techniques to do that and see how applicable they might be to this particular setting.
DR. COHN: Carol, thank you for your comments.
I think this has been a very useful briefing on all of this. I am sort of trying to think of where -- how to describe where this needs to go. I will speak to my own background, which is that I think I recognize at least intellectually the value of data linkages, though I think I would have to be reminded of a document that is more than what I see here about the national value, the public policy value, just because I think that is assumed in what I am saying as opposed to a reminder to those of us who don't spend all of their time in research about where the opportunity really is.
I hear an intellectual view, an assumption of the value. I think it would be useful I think for the country to be reminded of exactly what it is we are talking about here and -- the value to the country might be in terms of all of this.
Obviously, I am glad that you began conversations with Mark and privacy. I think in any of these conversations, obviously, the issues of privacy needs to be considered strongly and I see it referenced here, but, I think that this should be something as it goes forward that needs some input either by someone from the Privacy Subcommittee or reviewed by the Privacy Committee or whatever, just to make sure that there is the sort of appropriate balancing.
Now, Gene, I actually as we were talking -- I was a strong believer in actionable recommendations and a recommendation at a high enough level that says go off and be good or you should think about things or whatever is to me not very actionable. But I am an emergency physician so I tend to be very action oriented. I did hear in our conversation, you know, some very interesting ideas you were bringing up that aren't reflected here. No. 1 is that there needs to be a HHS structure to help promote some of these things or deal with some of these things or does it already exist?
You know, it is those sorts of things like how do we make actionable the view of this being an important area to move forward. Now, as I say all that, I don't know what direction this Population Subcommittee is going to take on this one and it is probably a conversation for you all to have because this can either be focused on data linkages and do you need additional input given that you have had one hearing on it? Do you need to have another opportunity to get additional public input and I think Carol McCall just brought up other groups that you probably have never even considered having come in.
I think Larry also brought up -- this Larry Green -- brought up some other groups that might provide some interesting pieces. I don't want to turn this into a 50 page, four year effort, but the question is is there additional input that might help round out the perspectives on this? Or is this the first installment of, you know, health services research for the 21st Century?
I am looking at you raising questions just because I don't know exactly where you want to go with this. Judy, did you have a comment on all this?
DR. WARREN: Yes. As I was listening to you summarize, I just wanted to know, yesterday, we heard from John Loonsk a tantalizing little piece that they may be coming to us later on to help them look at secondary use of data. I am wondering if that isn't linked with this effort?
DR. COHN: It may be a later chapter. I don't -- everything is related to everything. And it is a question of how you parse the effort so that you can actually make progress and I don't mean to --
DR. WARREN: No, that is why I asked -- if it is a later piece, then I am happy with that.
DR. COHN: No, we will be coming back and talking about secondary uses, but I don't think this is the chapter necessarily we would be starting with.
DR. SCANLON: I think there are a couple of short term actionable items that we might recommend and they relate to two things that I think we heard at the workshop. One is the issue of access. This, I think is maybe sort of in the context of not only the next steps in the research centers, but sort of the question of sort of how the research centers operate and is there any way to improve access to them kind of under the current rules and with appropriate safeguards.
So, that would be sort of one area and the second area was -- and we need to see if we have enough information for this, but there was the sense that each data linkage involves a new reinvention of the wheel and there is not a need for that, that it is not necessarily a structure within HHS, but potentially a process that becomes specified, that there is some agreement that these kinds of processes and appropriate approach to doing the data linkage, providing the right kinds of safeguards, et cetera.
I think if we have enough information there, that might be something that is also sort of short term. It does feed into a bigger agenda for the longer term about data for the 21st Century, but I don't think we want to wait and have everything with a bow on it before we can start to move forward on some of the pieces.
MR. SCANLON: There are a lot of items here actually. You don't need a master work to develop these. There are truly digestible pieces here that would make sense. You don't have to pull them altogether necessarily.
The other thing is I think -- this is health statistics for the 21st Century. I don't think the previous work really dealt with this. I think it was, you know, focused on structural sorts of things. I think the focus should be on functionality, on this is what is needed and this is how you approach it.
I am more interested personally in how it functions and what the outcome is. Focus on structures and, you know, state health boards and all of that really is not particularly -- it is probably not a 21st Century approach.
DR. STEUERLE: As I hear the mandate back to the subcommittee -- and we were starting with the very issues that have been raised here and the ones you did, Simon, is first we need to put in there a little more of a story so it is compelling. I mean, basically our story is with these data linkages we think we can improve health outcomes for the population. That needs to be clear up front. There is a cost to not doing these things to the public. That is a much more compelling story than researchers like data.
The second thing I heard would be to identify some actionable items, even if they are one or two or three. I mean, basically all of us were involved in this community. We may better list hundreds of things we would like to see done but it would be nice to say here are two or three steps, steps forward, because there is always more that we can do.
The third one, which may be the toughest is -- and I am not quite sure how to -- this last issue of structure, are there actually suggestions we can make to the Secretary, does Jim need two more staff people, do we need somebody who is in charge of this to make it happen. I am still worried about who has the incentive to really make this happen because it is just not going to be a once every six month meeting of our subcommittee that is going to be adequate. It really needs something internal within the system to advance the ball and I am not sure whether we will be able to iron that out or not. But that would be a third item that we probably need to at least constantly keep in mind.
MS. MC CALL: Going back to -- I have a suggestion going back to some of Larry's comments about kind of community-based things as a possible approach, which would be to use the lens of a community -- okay, the community has some things that it wants to solve. What is the outcome? What do we want to try to achieve?
Then almost do kind of an inventory if that is what you -- if that is what we want to call, then we have layed that out. What do we actually have today that we could begin using? Then how would we link that up? There are a whole bunch of issues that would come peeling out of that. But then what it does is it allows for essentially a gap analysis that says, all right, here is what we have today and here is how -- what we need to do, make recommendations for how to use that.
Then create the gap analysis that will imply then maybe some broader or longer term things to think about, all of them again pointing toward this 21st Century vision but not waiting, you know, for everything to be in place to actually fall for it. It is very local. It is very relevant. So, that is one possible approach.
DR. VIGILANTE: I think that is part of the story, but I go back to Gene's comment, that there has to be a forcing function. There are too many barriers and not intentionally constructed, but agency barriers, budgetary barriers, risk barriers, that no one on their own really has either the incentive or the authority to surmount.
I think there are real analogies to the failures of information sharing in the intelligence environment that we have observed at the national level among national intelligence agencies and at the local level between law enforcement and intelligence agencies. While that is a different paradigm and there are different urgencies involved with the sharing of data in that setting, time urgencies, I do think the lessons are similar if you want to create forcing functions for information to be shared in a usable way. Perhaps even examining that paradigm would be useful.
But I do think that unless organizational structures are in place to align the incentives properly and decrease the friction, it is just not going to happen and we will just be saying it is nice to do. I think we have to actually sort of contemplate what those structures might be.
DR. COHN: Well, Gene, I want to thank you for bringing this to our attention. We will now try to answer the question here. I think it has been a very useful conversation and I guess I am hoping that the subcommittee can think about what they consider to be next steps. My view is, of course, is to try to get something that doesn't stretch on as you -- I don't think we need the entire book and we don't need everything absolutely handled and this can be a first installment, but I would certainly look -- I guess I would hope if, indeed, we do a conference call, the full committee, that we might be able to discuss a draft with something maybe even more final for the June full committee meeting. That would be, obviously, my own hope. I mean, whether or not you decide to have additional hearings to deal with particular issues, I think is part of your overall project plans.
DR. STEUERLE: I don't know that we need so many hearings on this particular issue. I think in the Subcommittee on Populations, there are a lot of data issues we might want to address but we would like to figure out some way to put something -- reflect this somehow in the way of having issues based some actionable suggestions. We have been working closely with Jim's staff, who have been extremely helpful because, in fact, they deal with this issue all the time. So, it is not new to them.
DR. COHN: Okay.
Well, Don, do you have any final comments before we move on to our sort of next set of issues?
DR. STEINWACHS: Really no final comments, other than to share the same feeling that Gene expressed and you did, as Bill and others, that we really want to move towards some actionable, useful items. There are lots of avenues here for longer term exploration and that is -- the other question is what priorities are to be for those, but the more immediate one is what can we do that is actionable and valuable.
DR. COHN: Hopefully, we will discuss it a little later about potential -- if we need a conference call or not for between now and June, but I am not expecting the final document coming forward to that one but it may be an occasion for us to look at the next draft with the idea of a final document for the June time frame.
So, anyway, that is item 1 for the discussion of the morning. Now, item 2 -- and Harry and Jeff, I am going to turn to you to talk a little bit about a letter that, as I said, is really -- subcommittee deliberations, hasn't been agreed to by the subcommittee yet, but given that this once again will likely -- may come before us between now and June, I thought it was important that we at least discuss the information in open session.
Harry.
MR. REYNOLDS: Jeff, do you want to make any brief comments or lengthy comments you are welcome to? Then if not, I will go through -- I will kind of go through the body of what we were trying to do, but I would defer to you first.
MR. BLAIR: Thanks. First of all, thank Simon for selecting with our limited time that we bring this to the full committee at this point for input. The full committee might be aware of the fact that this is a little different than most of our other letters, very different actually, because this is trying to ask the health care community, the standards community to say how do we accelerate the process of going through standards development, NCVHS improvement, Federal Government regulation approval so that we could start to move faster to make standards available for use.
So, this is really a process issue. So, if you think of it that way rather than just a standards issue, then maybe the rest of you can contribute. So, that is the only thing that I would say as a preface.
MR. REYNOLDS: Okay. You heard us yesterday discussing the NPI and how long it takes the industry to get things done. So, today we are talking about speeding up not only the industry, but the standards as they start to be evaluated.
The current process and I will just use a couple of examples that we have in the letter that we are going to be talking to you about later. An NPRM, which is a notice of proposed rulemaking for claims attachment standards was drafted in 1998 and published -- and then you have a public comment period after that.
MS. GREENBERG: It isn't a rule yet, is it?
MR. REYNOLDS: You are correct, right. It was published that there was going to be a rule.
MS. GREENBERG: There was a notice of proposed rulemaking but we don't have the --
MR. BLAIR: More than seven years.
MR. REYNOLDS: Yes. And then you would have your two year implementation or more after that. So, as these things are moving through standards organizations of which there are many -- and I thought that was an interesting difference between a lot of the research -- our standards organizations out there working on a lot of these administrative transactions and other things putting together these pieces of how data can be shared and transmitted, but it is taking too long. The same thing occurred, an NPRM was expected to obtain public comments and issues in the pharmacy industry for billing of supplies and professional pharmacy services, first identified in 2001 and not yet published.
So, there are numbers of things that are out there through the standards development. The other thing that we are finding as the implementation of HIPAA went on, it was under a certain version of the claims record and the remittance record and so on. You know, that has been going on for quite awhile and there are changes that need to be made to that as everybody tries that looks at it and uses it, but the process again to get those things done is a five plus year effort.
So, we have been approached -- and for those of you that looked at all at the health IT bill last year, the streamlining of this process was listed in that health IT bill with NCVHS listed as a possible part of that process. So, we are kind of playing off of that same thing, too, since, you know, that bill did not go forward and there is no understanding completely yet whether or not it would come back in its similar form or a different form going forward. So, the testimony that we heard was basically that the Sainer's(?) Development Organizations would like to be able to do their deliberations, make their deliberations more public, more visible or more open for comment even than they are now, which they are very open now, promote -- more people becoming a part of it so that more of the industry really got a look at it then. Then rather than going through a lot of some of the other process, have NCVHS be the primary public viewing, you know, through the FACA committee process, the primary public viewing of the process for vetting and then it could go on to the Secretary for consideration and approval.
Once these standards are out there, trying to move them along so that you are not coming up with a standard and then five to seven to nine years later be able to do something a little different with it or deal with it is what this is really all about and what this process is really trying to do. So, we are in concurrence with that. I will just give you some highlights of what kind of our recommendation would be.
Well, let me say one other thing. In the January meeting, we heard from health care providers, payers, vendors and clearinghouses representing entities covered by HIPAA and those supporting these entities. There was no one that was against, you know, this type of a process, as long as it continued to have this public view. In other words, people could have their public environment to make their comments, especially NCVHS because different level people work at the standards organizations and they have come in and testified at NCVHS and I think they were happy with that.
So, we are just basically recommending to the Secretary that it does take too long. We recommend that the Secretary examine this proposal and evaluate its ability, whether or not, you know, the Department is in agreement that shortening this would be a good thing and then second have the proposal examined by legal staff to determine how its features might be incorporated into the process that is consistent with both the Administrative Procedures Act and streamlining the process. So, you know, that Administrative Procedures Act, we want to make sure that that is brought in, too.
So, that is kind of what we are trying to get to to look at, moving this along faster so that the standards don't become stale and basically lose momentum, especially as business is changing. So, once you make business go to these and then you don't update them, you really start to lose the whole benefit of getting them the first time.
That would be a quick summary, Simon, of what we are talking about, not eloquently done necessarily, but it gives you a framework so we can have some discussion.
Bill.
DR. SCANLON: I guess I am wondering have we really identified the root cause of these delays and have we eliminated it sort of in this recommendation because the disconnect for me is that CMS puts out sort of the payment rules for Medicare providers every -- I mean, I had the misfortune a few weeks ago of looking at the hospital outpatient and the hospital inpatient sort of rules. Each one is close to a thousand pages long. The NPRM probably came out maybe April, May. The final rules were published in August. So, we are talking about three months.
It is an issue that, yes, it can be done when it has to be done and when someone has the will to do it. The question I guess I have is why were these things hung up? I mean, I -- and that is in some respects a rhetorical question because I know that things get hung up. I couldn't tell you exactly, but I am sure that we can go and find an NPRM that has not yet reached the final rule stage and that is a lot older than the five years and the seven years that you have suggested.
What happens sometimes is that things die after they have become NPRMs and it is a slow death, to say the least. In this process, we are still talking about at some point, as I understand it, we are telling the Department, you know, now the ball is in your court and it is your job to issue those things. I guess and not to put the Department sort of on the spot, but are they going to be speedy or were they not part of the problem sort of in terms of the five years and the seven years?
That is why I guess what I have been struggling with is what is the real root cause here in terms of these delays because I am not sure it is the Administrative Procedures Act or the NPRM process.
DR. COHN: I think, Gene, you had a comment.
DR. STEUERLE: I think you ought to continue this line of discussion first.
DR. COHN: Okay. Actually, I should ask is Karen Trudel on the line by chance? Because it would be very nice to have her as part of this conversation, obviously.
Marjorie, you had a comment?
MS. GREENBERG: Well, I won't respond to that, except that I think the proposal that has come out of the DSMOs that generally is supported -- the DSMOs are the designated standards maintenance organizations, who maintain these standards. I guess if you could get a three month turnaround like that, maybe we wouldn't be making the proposals, but is that you actually remove one -- you don't go through the NPRM process and then the final rule. You go through all these other comment opportunities both at the standards organizations and before NCVHS and then you have an interim final rule or something as a -- you know, just before you actually implement, I guess.
But you actually drop one part of the process. So, it is not that you would still -- the letter would not tell the Department to just do the same process, but faster, but it would actually kind of change the process and appreciate in some ways the process.
DR. SCANLON: Right and I guess the question is -- I mean, going back to -- what I don't know is the part we are dropping, is that responsible for the bulk of the delays in the past or are we going to sort of have a similar kind of experience, I mean, in terms of delays. That is my only issue. Have you built in sort of the safeguards so that you will have a speedy process because it may be important to have in this new process some very rigid deadlines or something that drives it.
You know, the CMS rules come out quickly because if you don't pay providers, you would have a very big crisis on your hands. So, that is a compelling reason why they are going to move forward. So, the question is how do you create the same kind of compulsion here to expedite this process?
DR. COHN: Okay. Well, now we have Jim, Steve, Jeff and Mark. I don't know if they are all responding to you, but they raised their hands very quickly after you brought this forward.
DR. SCANLON: And I am speaking out of ignorance here.
DR. COHN: No, I think you are a very capable observer of the scene.
MR. SCANLON: There are actually many reasons. Remember, with HIPAA, just philosophically, HIPAA was a mandatory process. It wasn't like -- it wasn't a voluntary process. That was the process the industry used previously. Once you are telling the whole weight of the Federal Government to start putting people in jail or fining them, not that we have, by the way, but then a whole different perspective emerges and you have to -- you then have to deal with issues that you don't on a voluntary basis, but I think part of the problem was the statute itself. It required, you know, the folks who drafted it, they drafted it in a way where there was not a lot of flexibility given to the requirement.
No. 2, it was the industry, I think, and many of the standards were not ready really. They were virtual standards and when the committee looked at them, when the Department looked at them, they were in no position to be implemented as they were. A lot of cleaning up needed to be done. Implementation guides needed to be done. I hope we are past that now, but that took a lot of time.
The other thing is there were very issues involved and the one person's delay is another person's public protection process. So, that is why you have an Administrative Procedures Act. It is to protect in a way the minority -- you know, the folks who will have to deal with it. So, I think that all of these factors came into play and I think what is being proposed here is one of them. It is eliminating some of the procedural statutory requirements and yet trying to find a substitute. In other words, if the proposal here looks like what we saw in the health IT bills, where basically you would retain much of the public comment in the NPRM, but you would substitute, I think, some involvement of the NCVHS for some of that public participation and review. Then it is addressed at one of those problems. It is the one where there was some structural and procedural requirements that almost -- and it is literally a double, almost triple jeopardy. You had to go through -- first, you had to go through the industry standards process in voting. Then you had to go through an NPRM. Then you had to go through a final rule and other folks as well. Then you had to go through implementation, which is very complicated.
You could argue that that is not a good model even anymore given the way the industry is working now. But, again, you have to have the public protection and if you want a mandate something, then you were sort of forced into this general framework. You can certainly look at removing certain barriers and I think the focus here is on one of them. It is on those sort of the public protection, can we meld and can we streamline that process.
DR. COHN: Before I give it over to Steve, I do also want to clarify just to make sure that everyone understands the proposals really have to do with updating a previously approved HIPAA administrative and financial transaction rules.
MS. GREENBERG: Not new standards.
DR. COHN: These are not being referenced in terms of new standards nor in relationship to privacy and I would have to look back at the book to see if security -- I think security was -- it is not part of it. So, it really is that concept of the updating process that we are really -- and I don't think that Harry quite made that clear. Of course, we didn't ask him to --
DR. SCANLON: Also, what Jim said that was very helpful was that in some respects the situation has changed. I mean, in terms of the question I was raising and whether or not the proposal was sufficient, it is potentially sufficient because it is a different world. It is not trying to do what you were trying to do in 2000. It is what you try to do in 2007, which is very different and you are sort of comment also sort of characterizes it, it is different than what we tried before.
So, both of those things -- I was trying to help you in terms of -- I was being strong enough here and you are saying that we may be because we are taking on a different challenge.
DR. COHN: Maybe but I would have you continue to keep asking those questions. Bill has actually a tremendous amount of congressional and federal EPA experience. So, I listen very carefully when you ask these questions.
Steve Steindel, you are next.
DR. STEINDEL: I think Jim did a very nice job of summarizing a large portion of what is needed to address your question. Just to add some information about why the standards development organizations and DSMOs are bringing this forward is because one of the observations is the procedure really goes like this. It is first the SDOs meet. You know, they go into their sausage factory, however long it takes, and they produce a standard to address the needs of industry. Once they produce that standard and decide, okay, it is time to upgrade the HIPAA transaction requirements, they go in and CMS releases an NPRM. Well, first, there is a delay that we all know from the government process of getting the NPRM through. So, that introduces one level of delay, which can be, you know, anywhere from a few months to a year or two from the point that this standard development organizations develop the standard.
Okay. Now, the NPRM goes out for comment. The great world now looks at this and they are going to say, well, how does this affect my business and, as Jim points out, one of the reasons we have the Administrative Procedures Act is to give people who might not have been involved in the process a chance to comment. Well, they come back and comment and they say, well, this is going to affect my business. Well, in this particular case the business that is really being affected is a standard that was developed by a standard development organization.
So, now the standard development organization has approved that standard like three years ago and now they are asking for changes in that standard. So, it has to be reopened. It has to go through the standard development process, which can take another year or two and then go back for the final rule or maybe another NPRM. So, this is where the steps of delay comes in and what this compression of the time frame tries to do is to decrease the amount of time from when the standard development organizations develop these new modified standards.
Now, as we said, these have already been introduced in one form. So, these are modifications to the point where they actually can be implemented from now the undefined time frame because of all these changes to something that might have a better chance of being defined and planned for.
MR. BLAIR: It is so nice when Jim and Steve can wind up saying everything I was going to say. I don't have to add anything else.
DR. COHN: Okay. Good.
Marc.
DR. FITZMAURICE: This is Mike. Can I jump in?
DR. COHN: I was going to let Marc Overhage go and then you can go on next.
DR. FITZMAURICE: Sounds good.
DR. OVERHAGE: I think this is a good and important thing. I guess I mentioned this to Simon walking in this morning. I continue to really worry a lot about the other end of the process, which was great. We have got a standard out there and it speaks a little bit to what Steve was describing. By the time something gets to the implementers and then they say we can't do it and it goes back, I am not convinced we are making very much on the ground progress. Frankly, I think we could spend a whole lot of time trying to -- I mean, I think there is a good and proper thing, but I guess -- and this may not be the right group to consider it and, Simon -- but I am really more worried that the things that are out there that are usable, maybe not perfect, aren't being used, by and large.
The example I gave Simon this morning was just day to day, I talk to a payor every week that I say, so, how do I access your eligibility inquiry process. That is the answer, even the large ones. So, I don't really care if we get the standards improved a lot if we aren't getting them implemented. I think they are both important processes. So, I wonder is this the question?
DR. COHN: Mike, do you want to comment or can I let Harry respond to that because I am sure that Harry has a good response. Harry, why don't I let you go and then I will let Mike go.
MR. REYNOLDS: I have no response as a payor. I am not responding that way. The way I am responding and I think -- I am playing off of Marc's comment and we discussed it at the last hearing and that is the standards development organizations are tending to have very technical people working on them and we have to somehow figure if we speed -- whether we speed this up or not, we have to somehow get the business people involved in these standards so that they understand how they are going to use the standard and get ready to use the standard, not to have it be people that just get sent to meetings. Everybody cheers that they have got a standard, but nobody in all the businesses that are going to make a difference with it, especially as we talk about anything going forward.
We have got to make sure that that middle step is in there, that everybody understands from a business standpoint why it will make a difference. That maybe, Bill, somewhat of the reasons that have happened in the past. If you send a disparate standard in and it doesn't have a package around it, like this is going to move the world forward in the following six ways, it is kind of hard to get anybody to root for it, other than maybe the people that put the standard together. So, I think you are both absolutely right on and I think that is the thing that we also discussed with the SDOs in the meeting is that they also have to start looking at maybe trying to get other than just technical people that are working on the standards, more business people involved in that process earlier to get some buy in --
MS. MC CALL: I agree with you, Harry, and the reason is this. In addition to what you said, the fact is the data that is being produced, whether it is being produced by a health plan or a hospital or physician practice, is being produced by a business and so since these are the generators, the creators of the data and if the people that use it want something different, they have to engage the people that create it, their suppliers, to actually talk about what it means to create something new for them.
So, I think it is an absolutely vital step. Without that dialogue, things will continue to remain slow. They are not going to necessarily speed up and become much more nimble.
I guess I would add something else. There were some comments earlier to the effect that I don't really care if we get new standards. I just want us to use what we have. I guess I would submit that by starting to use what we have and finding out what works and what doesn't work out of that whole process, I think we will be able to make recommendations for how to change processes going forward. So, it remains more than kind of a theoretical debate, but it is grounded in something that people are actually trying to do.
DR. COHN: Okay. Now, I am going to let Mike talk in just a minute, but I do want to just remind everybody as we talk about this one because we are -- and I realize that there are a number of M.D.s in the group and a lot of people who deal with the claims transaction that has to do with professional or institutional services, but I do want to remind everyone also that pharmacy is covered under this one. Pharmacy is 95 percent implemented electronically and they are under the same -- that is what ACDDP(?) tells me. All I am saying is is that I just have to remind you that this is not just a conversation around professional and institutional claims and in transmissions.
I just wanted to make sure that we are aware of that in terms of the concept.
Now, Mike, you are on next.
DR. FITZMAURICE: Thank you, Simon.
As I listened to what everybody said, I don't disagree with anything that I have heard, but I see that NCVHS is successful because we can get the players to the table, if not as numbers around the table and there is a lot of power in the numbers, we can bring people in to testify and to advise us. Now, this isn't generally true in all of the other standards -- not all the players are at the table at the same time in these other venues. Probably the reason for that is that the gains for each player are so small it can't overcome the inertia and the benefits and costs of the workarounds that they develop individually.
So, if we are going to have something to be gained by all of this, it takes common action so that all may gain, even though some may gain more than others. You have to listen, Steve, as to some of the benefits are greater than or equal to the sum of the costs, both public and private for the health care systems so that someone has to take the lead in developing standards, implementing them, testing them and then monitoring them for public good. It is something that the private sector has a large stake in, but the gains are split so far among many, that the private sector finds a large cost in coming together to create small gains in standards.
So, I applaud what ONC is doing. I applaud what NCVHS and other agencies are doing. We can't lose sight of the fact that the gains to be made can be great, but we also listen to the industry to find out where the greatest gains are and work from them. NCVHS can pull the people together. We can pull other agencies together and have them report to us on what is going on. But because the -- are so small, we have to -- what are the coordinating factors in this.
DR. COHN: Now we have the following people who want to comment and that is Larry Green, Bill Scanlon, Jeff and Gene Steuerle and then I want to wrap this piece up. Gene, you don't want to comment? Okay. So, three and then I want to wrap this up. We aren't voting on this one today and we need to go to another issue or two and then sort of try to put everything together.
So, Larry, you are next.
DR. GREEN: I actually have a question that builds on Bill Scanlon's question about root causes and also on Marc's question about implementation. The conversation I have just heard is my orienting conversation. So, I beg for forgiveness for ignorance here or whatever. But I am surprised that the conversation did not talk about commercial interests more either as an impediment, a fear of loss of revenue or fear of exposure to added liabilities.
It seems implied, but it is not been made explicit. So, I want to take advantage of being a newbie again to just ask the question of the subcommittee. What is the effect of commercial interest and either delaying the establishment of the standard or in implementing an agreed to standard. Is it irrelevant? Is it a small thing, medium size thing, big thing? What is the committee's view?
MR. REYNOLDS: I will take it and I will start it. I would say the hardest part in driving this industry is exactly your point. Everybody looks at it their own way. It is required but in some cases it is not required for everyone. In some cases it -- the large players can spend the money to do it. Smaller players continually may feel dragged along, that they have got a sort of small doctor's office and maybe called upon six times to make changes related to some standard and in the end did they really have a business case? Somebody said they did but do they really?
What does adoption mean? What is the difference between having a standard and then what does adoption really mean? If it is not incorporated in the work flow, the smaller practices, if it is not -- if it doesn't make a difference in their day-to-day life when they spend the money and in many cases, if they don't see additional reimbursement or they don't see other things for it, it doesn't play.
So, the hardest part, Larry, is -- and that is why we were just talking about getting more people involved in the standards and so on. The standards up until now have been a set of data, not necessarily all the business practices and work flows and everything that went around it. So, the lack of getting all the way -- we did a HIPAA lessons learned situation and I will play off Marc's earlier comment. Some of the things are there. They are not implemented and some of the things that aren't implemented, whether it be on the payer side or the provider side and other, are actually the ones that would probably have the most business return in the end and so people had to put in the claims and remittance, but some of these other things, like the eligibility and claim status and other things that would eliminate phone calls and reduce bad debt and do other things, the vendors and everybody from the industry to get those implemented.
So, it is really how do we -- in the NPI discussion we had yesterday is a perfect example. How do we get this whole industry to buy in? So, every time we do one of these, you can talk to enough people that is the right thing. What does buy in look like, feel like at all levels, you know, from the individual provider to the large carrier, to the large hospital to a large other. So, part of our entire effort is to continue to make sure the right people come to the table to talk about the whole subject so that you are not implementing a standard. You are making the health care industry better. I don't think that has been the discussion up until now. It has been implementing this standard. So, go do this and just like you were talking about research and other things, there is no big picture that says here is where we are going. So, this piece helps this way and this piece helps this way. It has been a very focused due to standard.
Nobody can give you the name and number, the 835 and 837. Come on. You are talking to a CEO of a company or you are talking to a doctor and 837 and 835 are just some numbers somewhere. What did you just do for me or not? That is the challenge that I hope we all take around this table is how do we take these things and make something happen, not just congratulate ourselves or everybody else that we implemented a numbered standard and hallelujah, who did it or who didn't. So, that would be my feeling. That is the struggle that we are continuing to have as we try to drive through this is not to just make it a numbered standard, but make a difference.
Does that help? I don't know if it answered your question, but --
MS. MC CALL: Amen, brother.
DR. COHN: Now, Marc Overhage, I think you want to comment on this. Then we will go to Jeff Blair and then Gene and then we are going to try to wrap this particular piece up.
Marc.
DR. OVERHAGE: No, go ahead. I think it has been said.
DR. COHN: Okay. Jeff.
MR. BLAIR: Five to ten years ago, I think our perception, when we talked about standards in a large part was message format standards, the traditional HL7, ASC, X12N and then it expanded to include the clinically specific terminologies and in the last number of years it has expanded along the directions that you have just raised and it has had various terms. It has either been called getting the business community involved or calling it business processes, work flows or codification of process. There is a document that has just been released with a new name and I think this may be very helpful because while we thought of ourselves as the standards subcommittee, maybe we should begin to think of ourselves more broadly and consistent with what -- the document that has been released and its interoperability.
Interoperability includes technical standards. It includes semantics and it includes business processes. If we start to look at it more broadly -- by the way, I think that document that has just been released is called "Coming to Terms," in this last week from HL7 and they have studied this for like nine months or more. I think that maybe -- and, Marc, I don't know --
DR. OVERHAGE: I have to get to nine months or more first.
MR. BLAIR: Is it the more --
DR. OVERHAGE: Or speedy process.
MR. BLAIR: Well, the thing about it is that I think that maybe we could find a way to accelerate the development of standards if we begin to look at it more broadly than just in terms of technical standards and look at it more in line with this document called "Coming to Terms," where it is interoperability as a whole.
DR. COHN: Gene, I will give you the last comment and then I want to wrap this particular conversation up and then we need to talk about the HIPAA report and then we will try to begin to put things together.
DR. STEUERLE: Mine is very narrow. As you redraft this letter, I think you could beef up the recommendation, make it a little stronger and say you recommend for this particular type of procedure and there have been many discussions that have gone far beyond what this letter is about -- this particular type of procedure that the Secretary adopt the streamlined standard along the lines that have been recommended after review.
I think it is too much you should review and think about and I just think you should adopt a streamlined standard and give them the flexibility of how to get there, if that is where you come out.
DR. COHN: This has been a very interesting conversation. I want to actually -- it is always wonderful when we get beyond Standards and Security Subcommittee for a broader conversation really around the issues around this. I think we are certainly each in our own way reflecting on the issues relating to actually the administrative simplification that was envisioned by HIPAA versus the tools which are the standards and that is sort of pieces -- I mean, I think you begin to see why in the annual report some people think I see a rosy view of the world, but this issue of -- and we see this in almost every IT implementation that I have ever dealt with and I have been dealing with IT implementations now -- it is embarrassing. I think I wrote my first system back in 1984. So, I have had 24 years --
PARTICIPANT: Was that Fortran?
DR. COHN: It was close to Fortran.
But in every software implementation that one ever sees, you do implementation and then you have to go in later and you do optimization. That is why I make that comment in the cover letter to HIPAA and I think there have been very few implementations, I think. I guess we all hope that everything will happen at once. We will do business process. We design. We all come to a vision of common business processes and, et cetera, et cetera. I looked at Kevin only because I know he has been consulting on some of these issues over the years. It never quite happens that way.
You usually are busy trying to get things in and then you as a next stage try to optimize. I think we are just maybe beginning to get into that process on HIPAA. At least that is what I am beginning to think I am seeing.
But I just want to remind everybody that this is sort of how it works out in the world and we just sort of need to keep that in mind in terms of this letter, in terms of our HIPAA annual report and all of that. You all need to sort of think about that.
Now, I want Maya to come back and talk to us a little more about the annual report at this point. At the end of that, there is a couple of questions, sort of globally I have for us. I mean, which is what of all of this might we feel comfortable if it came to a conference call between now and June? Does some of this stuff need to go back to subcommittee for further review, coming back to us for a face-to-face meeting? I mean, as we begin to think about exactly what we are going to be doing between now and June and that is why we are spending this time talking about all of these things.
So, I just wanted everybody to reflect on that. Some of these things, you know, there are many ways we could triage the various issues we have just been talking about.
Now, with that, Maya, do you want to -- I guess I should start out with the HIPAA letter. I actually reviewed it this morning and I think Maya vastly undersold how good the whole thing was. I would myself sort of -- yes, it needs wordsmithing. It needs -- I mean, there may be something else needed there, but it is about 85 percent of I think what we were all sort of talking about yesterday in terms of it being something that was broader than just HIPAA and reframe the other HIPAA -- other NCVHS activities, though it wasn't the main focus of the document.
I think Maya would like it to be more incisive and controversial perhaps.
MS. BERNSTEIN: The committee, unless you take a new vote, is not at liberty of delivering anything new. On the other hand if you don't see anything new reported -- so, that is okay. I mean, the report is supposed to be a report on what happened last year. So, that is fine. The Congress hasn't seen it yet, even if the Secretary has. Normally, you write your letters to the Secretary. The work that you do is directed to the Department.
So, reporting to the Congress is a bit different in that sense. Anything new that you want to say, obviously, the committee has to go through its process. So, I don't want to overstate.
DR. COHN: I don't know if any of you have had a -- I mean, it is asking a lot -- some people were -- last night. Others were trying to work through snow. So, it may be a lot to ask people to have actually taken a look at it.
Marjorie.
MS. GREENBERG: I was looking at it later last night. I should have waited to the morning. I definitely wanted to thank Maya for taking this on at the sort of midnight hour. I think most of the content, I agree with you, it is very redundant. It is less redundant now that we have -- you know, you have streamlined the executive summary. So, I think that is good. It is actually is more of an executive summary. The executive summary may need some need some kind of concluding paragraph or something to give it a little punch, but I think it is now not -- it is not nearly as repetitive as the old versions were with the long executive summaries, but there is still the report itself is very -- the style, which you were just following from the previous seven ones, I know.
It is very redundant. So, I think either we could -- I mean, I don't know if you have the time to spend on it or we could bring in an editor or something, but I think we could --
MS. BERNSTEIN: I can certainly do it. I just couldn't do it by today.
MS. GREENBERG: Oh, sure. Understandably so. That is my sense.
MS. BERNSTEIN: I think what Simon is asking is about the process, what the process is that the committee feels comfortable and how long you are willing to delay before transmitting this report. You could hand it off to the Executive Subcommittee and have me work on it some more and have the Executive Subcommittee look it over and then present it back to the committee either in a conference call to be scheduled so that could vote on it in a public conference call or you could wait until the June meeting, which I understand is less desirable. I don't know if there are other possible ways to handle this that Jim, Marjorie, somebody else could suggest.
DR. COHN: Before we get into the process, I am just curious have any of you had a chance to look at it at all and do you have any comments just to sort of give Maya some input.
Harry, then Judy, Larry and Marc.
MR. REYNOLDS: I have been through the body a number of times and Maya and I have conversed. So, I have made all my changes to the body. I am comfortable that I think that is where I am.
The payoff of our earlier discussions and maybe a comment that was made yesterday, I think that the executive summary, let's take the second one, for example. It starts out "The NPPEF armed congress..." there was a rule there that every provider has got to -- we are trying to streamline the provider numbering process in the United States to make it easier for them rather than them having to deal with all the different entities they deal with. And, oh, by the way, the Federal Government did a good thing by putting together a national database that will enumerate those numbers and everybody that would need to deal with that that would have access could go get it.
If it said that, if it said it that way --
MS. BERNSTEIN: Plain English, is that what you are asking for?
MR. REYNOLDS: Yes. That is where I am going. I like what is in the summary as far as the subjects, but I don't think it talks -- in other words, back to this idea, what difference does it make that there is an NPPEF, not the fact that we have one. So, that would be my own -- I have been through the body a lot. I don't have any comments there, but I would say if we could snap those up as to what difference they made, then I think that would be perfect.
DR. COHN: Judy.
DR. WARREN: Mine was kind of style. On page 2, under activities --
MS. BERNSTEIN: Page 2 of what document?
DR. WARREN: Executive --
MS. BERNSTEIN: Executive summary. Okay.
DR. WARREN: The first paragraph under "Activities of NCVHS," if you go towards the bottom, it suddenly starts talking about a subcommittee, but it doesn't tell me which one and I guess I sort of thought that when we put activities out, it was from the whole committee not from subcommittees. So, I really kind of thought that should be eliminated from the --
DR. COHN: Remember, this is not the final version. We are not voting on it today regardless.
DR. WARREN: Well, the point that I want to make is -- and maybe I am not making it well, but it is when we put out reports like this, should it come from the entire committee or should the work of the subcommittees be presented.
MS. BERNSTEIN: No, I think you are completely right about that and I will change it. I think the reason that got in there is because we were describing the hearing and I didn't want to say that the committee held the hearing because, in fact, the full committee did not have a hearing. It was the subcommittee. That is where the confusion came in, but maybe if the subcommittee -- we can say that the committee held a hearing. It happened to be in front of other people.
MS. GREENBERG: I think we can refer to the work of the subcommittee but any kind of conclusions, recommendations, whatever, come from the full committee.
DR. WARREN: Then my only request would be is if we do refer to a subcommittee that its title be put in there, so we don't start getting concerned about who said what. You know, I was just reading this last night thinking about, okay, I am a congressman or I am Nancy Pelosi and what does this mean to me --
DR. COHN: Larry.
DR. GREEN: I am unencumbered by all the work that went into this.
DR. COHN: And remember, it is not time for wordsmithing.
DR. GREEN: This is not wordsmithing. I read it through two or three times and I would like to raise one meta issue and then I have two very specific questions about what something means.
The meta issue is I don't think HIPAA has helped me a damn bit to speak of in practice. It is two years into it. This talks about all the progress and everything and it is called administrative simplification. I don't think there is any simplification of this too complex, overwhelming, dysfunctional health care system. I want to get that out on the table.
So, the tone and the meta message, the meta message from this thing, I don't think I personally agree with, that my life as a citizen of the United States, as a physician and most importantly as a patient and even more important as the son of parents, who are trying to navigate the system, I don't think we are making very much progress on the intent of the original HIPAA legislation.
From that perspective -- now, I will come here and I will look at all the work, all the effort. I listened to the conversation this morning. I mean, this letter seems unattached to some extent at a meta level to the conversation we just had about our rate of progress and why we have all these delays in implementation.
So, remember, I started saying I am unencumbered by any real inside knowledge about how we got to this letter. Now, having said that, I don't understand for sure what happened with this unique identifier for individuals being postponed indefinitely that is mentioned on page 2.
MS. BERNSTEIN: Of the executive summary?
DR. GREEN: It is on page 2 of the 8th annual report, the larger thing.
MS. GREENBERG: It is by Congress.
MS. BERNSTEIN: Well, yes, there is a --
DR. GREEN: My point is that that is a very big deal.
MS. BERNSTEIN: Yes, there is more detail about that later in the report, where it basically explains that the Congress has passed a law forbidding appropriations to be spent on the matter. The Department cannot work on it.
DR. GREEN: So, many of the executives in the legislation are compromised by that decision in my view. The privacy issues may be protected, but there are other public health issues that are sorely compromised and data linkage is sorely compromised. So, I just want to call attention to that and then in the conclusions it seems to me that we are describing this high level of adoption for the health care claims transaction process and, yet, we still have misgivings about it that are really substantial.
So, it just seems to me that the letter is too darn positive from what we have talked about here and what is going on. But, again, this is probably the last time I can play this card. I will have to behave myself from now on, but I am new here.
DR. OVERHAGE: It is good to have Larry here because I may seem more mild that way. I am going to stand right in front of him because I agree completely. But I did have maybe a concrete thought along those lines and I said a little bit about this yesterday because I share that concern that this sounds like, oh, we are getting it all done. Progress is being made and it is, but is progress being made at the hundred thousand foot level and not necessarily on the ground.
I wonder if part of it -- and I was reflecting a little bit on it yesterday. I asked the question what is it we would like Congress to hear about this and, frankly, I don't think they give a darn about at some level did this or that regulation get passed by the date that Congress said it should. I mean, they do care about that, but not -- I mean, they can find that out easily enough and it is not really -- I almost think what I would like to see if I were a congress person in this report is sort of the how far are we along the pathway. You know, and there are different trunks to that pathway. There is getting those regulations promulgated. There is getting standards. I mean, there are different trunks along it, but partly helping them understand that those trunks are the foundation that has got to be there and we are well along the way on the foundation at some -- you know, from some perspectives. But we haven't got much of a house yet.
There is a lot of different parties and Simon was helping educate me yesterday a little bit about some of the other organizations that might be driving some of these pieces and so on. But if I were a congress person and I saw, well, gee, we have this foundation but the house isn't really quite -- you know, there is not even a frame yet. Well, maybe there is a frame, you know, but we haven't got any walls yet. Where do I look? Who am I expecting to drive that forward? I mean, is that broader framework that I think might be helpful to them to know, yes, HHS and the Secretary is doing these things and that is good. There are some other parties that have to do things. Industry has to do certain things. Providers have to do certain things.
We can't lay all those out. We might be able to give them a framework for thinking about that.
DR. COHN: Just to make sure I am capturing your views, which I actually sort of resonate with, which is at least in some of these things referencing other WEDI, CAQH, which I know Harry can't comment about, other activities that actually are moving things forward.
Jeff, why don't you go.
MR. BLAIR: Actually, I was really glad that -- is it Bill? I am sorry, because I can't -- Larry and then Marc who made these comments. These are comments that I have been hearing for quite some time from many, many sources. I felt as if I wasn't able to adequately communicate it here. So, I was really glad that it was set forth. In order to put this document in a positive way, because I think HIPAA, the positive thing about HIPAA was it was the first major step that was taken by the Federal Government to help the health care delivery system make the transition into the information age.
Now, it happened to have done it in a certain way. It happened to have been imperfect, just like a lot of first steps are. But I think that this letter would be much better received if it is represented as the first major step to help the health care delivery system make its transformation into the information age and that it was followed by other important steps, things like the e-prescribing activities, things like the NHII activities, things like other things being done in industry in cooperation with us in terms of things that Harry is doing. So, my thinking is that if we put it in context with the transformation that is going on and that the Federal Government is doing a lot of good things that are part of, rather than celebrate it as an anniversary in itself, I think it is much more likely to be received as a positive first step.
That is my suggestion.
DR. COHN: Jeff, thank you.
Then we have Mark, Harry, Leslie and then we need to sort of figure out where we are.
MR. ROTHSTEIN: Thank you, Simon.
I have sort of a substantive and a procedural comment. On the substantive side, I agree with virtually everything that has been said. My criticisms of HIPAA in general, the privacy rule in particular have resonated through this room for seven years. But that brings me to my procedural comment and that is I don't know that this is the right time or the right method for addressing some of our larger concerns about HIPAA. If we wanted to take a sort of a ten year look or now maybe an eleven year look or a twelve year look at HIPAA, what we really would need to do is perhaps appoint a HIPAA assessment working group. This is not something that can be done by the committee as a whole. It is not something that can be done at the time that the letter is in an early draft.
I mean, the issues that are raised are very important, very fundamental, but I just don't -- and I appreciate the fact that this might be viewed as our annual shot with directly going to Congress. But at this late stage, I think that the best that we can do and the best that we reasonably ought to strive for is to have a cleaner, tighter, more explicit letter that is understandable by the members and their staffs and not try to sort of break new ground in terms of our assessments on whether the Act has worked well.
We have nibbled around the edges of it in many different subcommittees and many hearings. I know we have done that in privacy. We had a hearing not too long ago like how would -- and the issue was a research question. How would you measure whether the laws had any effect? It became very complicated. So, my plea would be just to try to keep us within the general format and not to try to bite off too much now.
MR. REYNOLDS: I can go with that and the other thing maybe, Larry, for you and Marc and some of the other newer members, the very last statement in the executive summary, very last paragraph, mentions lessons learned. We are on record with the Secretary, especially from Standards and Security, we built in it. It came through the full committee. We are on record as to what have been the significant implementation and return on investment and other issues related to HIPAA. So, this is not a -- this may appear to be a softball to Congress, but we put a letter forward to the Secretary that was -- and it is actually -- it is going to be attached, but we actually --
MS. BERNSTEIN: Are these the summary ones that are in on pages 10 to 13 of the actual report? They are actually just listed there. That is the same ones, right?
MR. REYNOLDS: So, I agree and I think -- trying to figure out what we do or don't want to say to Congress and I like the idea that this is a journey and I actually would -- ten years of HIPAA is kind of funny because it took a whole lot of warm up and maybe we are in the second year because, you know, until -- you know, I mean really I am not sure -- I mean, yes, we have been talking about it for ten years, but we haven't really implemented anything. You know, the contingencies just went off last year on claims and -- so, I think, you know, first step of a journey I think is a great idea, but I did want to point out that we have taken a hard look at that, Larry, and the comments you made are not unrealistic to us. They are not unknown to us and we heard them and some of us have actually made the other comments numerous times prior to you making it as we have tried to implement it in our own jobs.
But I just think that is in there and we did try to take a shot at that. I am not defending it. I am just making a statement that we are on record that the next time this happens, other things need to be done differently. Otherwise, nobody is going to get anything.
MS. BERNSTEIN: Can I ask a clarifying question? I want to ask Mark to clarify, were you making a proposal that we should confine the report to the HIPAA and leave off -- I mean, to the activities of the last year and leave out the larger lessons learned? I am asking Mark whether --
MR. ROTHSTEIN: No. What I was suggesting was that we shouldn't try to make sort of sweeping judgments about the successes and failures of the legislation and our concerns about that. We had certain lessons learned. So long as we can tie them directly to letters that we have already sent -- what I am concerned about is that we start adding new ideas and new concerns, new frustrations that haven't already been previously expressed. I think it would be very difficult and awkward to do that now.
MS. BERNSTEIN: I was going to ask Larry and Mark if what they were saying is the tone of the letter is still even if it is confined to -- is still from his point of view too positive.
DR. COHN: Now, Leslie is not here. Judy, did you have a comment?
DR. WARREN: Mine was stimulated -- and Mark said a lot of it already, but Larry had mentioned about the unique patient identifier and we did spend a lot of time in reviewing the status of that and hearing of that. When I go through the report, part of that is -- I mean, none of that is reflected because it is embedded in the report that we did on the National Health Information Network. So, I am just wondering if maybe some of that needs to be pulled out and placed in the discussion of the national identifier, especially since that is coming out loud and clear from the AHEC as part of the -- technologies. But we do have this patient matching or however we want to phrase that.
Or if we just leave it the way it is because we don't have a unique patient identifier but kind of highlights some of that work that we talk about being here.
MS. GREENBERG: Matching patients with their records.
MR. SCANLON: I wouldn't even include it in there, in the executive summary. I mean I think you --
DR. WARREN: No, not in the executive summary. In the report.
MR. SCANLON: But, you know, again, you have to be careful. Congress has to write that there will be unique patient identifiers. The fact that we are looking at patient matching and identification, that is a little different. That is not pitching for a unique identifier necessarily, but you just be careful what you say back to Congress about actions they have taken prohibiting --
DR. COHN: Well, maybe the answer here is -- I actually agree with you, Judy. I mean, I think that there is a section in the body where we talked about the fact that unique identifier for individuals cannot be worked on and I think maybe beyond that while that has been worked on, the committee has done work looking at matching patients to their records in the past year --
MS. GREENBERG: And included recommendations in the NHIN report.
DR. COHN: I think it would be fine to have a sentence or two about it.
MR. BLAIR: Can I make another suggestion that I think is another way of positively characterizing this? If we indicate that HIPAA was the beginning of a journey and one of the things in that is that it expanded the NCVHS and because it expanded the NCVHS, the NCVHS has taken on a lot of other things that have built upon the initial first step that Congress has made with HIPAA because NCVHS took the one or two liner in HIPAA on PMRI and expanded it into the consolidated health informatics initiative standards.
PARTICIPANT: What is PMRI?
MR. BLAIR: Patient medical record information. There was like a one or two liner in the HIPAA law saying that we should start to look at that. Well, we took that and we expanded it tremendously and we -- right. So, in part one of the big successes of HIPAA was that it expanded it and made NCVHS capable of driving forward clinically specific terminologies. It allowed us to do the National Health Information Infrastructure. It put us in a position where we could respond to Congress when they asked us for e-prescribing. It started a lot of good things and I think that -- so we have an opportunity to say a lot of good things about HIPAA without emphasizing some of the areas that people are frustrated with.
DR. COHN: Jeff, I think that actually the letter -- I know you haven't had a chance to review the report. I think the report is actually excellent in that it expands beyond HIPAA but it also has to include HIPAA and I am certainly not going to be an apologist for the HIPAA implementation. I would actually rather than describing it personally as a first step, I think it is a foundational element. I think these are all sort of wordsmithing issues.
Now, let's stop the conversation here about all of this stuff. We have got like a couple of different things going on here. We have talked about a letter from Populations. We have talked about a letter from Standards and Security on potential sort of modifications or streamlining of the HIPAA process and you have got this letter. Now, the questions I need to bring up to the committee are are these things that we -- do we feel comfortable during a conference call between now and June addressing these issues or at least trying to make some further progress on them and should we arrange a public open conference call of the full committee for some time between now and -- I mean probably sometime like two months from now or something like this to really -- to go through these things? Do we feel that we can make progress or come to conclusion on one or any of them? So, that is one set of options.
Alternatively, if there is a decision made that, gee, X could be sent off to the Executive Subcommittee. Other things really need full face-to-face full committee deliberation in June. That is another approach. So, I just have to ask you all to sort of think about the three things that we have going here and then we will talk about the biennial report, but I don't think that is going to be a vote between now and June.
MS. GREENBERG: It is not really a letter. It is a whole report.
DR. COHN: It is a whole report, but we haven't started on it.
MS. GREENBERG: No, the HIPAA report.
DR. COHN: So, what is the preference of the committee on this one? Should we schedule a committee meeting, a conference call to deal with these three issues.
MS. GREENBERG: Two of them have not really been through their subcommittees yet. Isn't that correct? I mean, the Standards and Security hasn't had a chance to go over this first draft of their letter and talk about it and the data linkages thing hasn't really -- because both subcommittees didn't meet yesterday.
DR. SCANLON: I don't know if Donna is on the phone, but Gene and I would believe it is not necessarily the issue of face to face that is critical in June. It is June is further away than May.
DR. COHN: So, your view on that issue is that you need until June to come forward to us for an action item. Okay. Well, that solves one issue.
MR. REYNOLDS: Our subcommittee, we heard the testimony. We have agreed that we agree with moving something forward. I think we could edit it through some kind of a conference call on Standards and Security in advance of whatever you set up for the full committee. I think we could definitely do that.
One other thing I would like to ask that if we agree to these processes of these letters, that the members of the full committee that aren't on the subcommittee, if you have a fundamental disagreement with any portion of the letter it would be good to contact somebody on the subcommittee so the subcommittees could try to work it out before it comes to the full committee rather than waiting to a full committee call and then all the sudden somebody is against the process.
I have no problem with wordsmithing or another, but if we are going to do these things on conference calls trying to -- at least the subcommittee could work it through. Anybody can say anything they want to on the open call, but it makes it a little more difficult --
MS. BERNSTEIN: We can certainly circulate drafts in the interim period. We did that with the Privacy letter from June and actually thought it was pretty helpful that the committee was very engaged when it got to the discussion and also we collected comments in the interim.
MR. REYNOLDS: Yes, but making sure that the people comment. I guess that is what I am saying. If there are comments --
DR. COHN: Maybe I am asking slightly more cerebral questions. We have talked about that and then we will go to the HIPAA report. The question is your confidence -- a call is not the same as a face-to-face meeting in terms of coming to conclusion on things. I need sort of your general sense of whether these things can be dealt with. I mean, I certainly feel that the HIPAA letter or report could either be dealt with during a conference call or potentially even referred over to the Executive Subcommittee.
The question is is that -- we certainly have a couple of options on this one. So, I guess I am looking for at least in terms of the letter and the issues that you heard discussed is there something that you feel that you can come to a conclusion and feel comfortable voting on during a conference call if we decide to move forward on that?
DR. STEUERLE: I would like to suggest that the actual report -- maybe just following a little bit of
Mark --
DR. COHN: And this is Harry's letter now we are talking about?
DR. STEUERLE: I am talking about the report to Congress. It seems to me that we could put that back to the Executive Committee and let them put it out. It is a report and it is not another set of recommendations. At some point I think you can delegate a little wordsmithing. There were some contradictory views on what should be done here, but I don't know that it is the type of thing that is worth coming back to the committee for another long discussion. It seems to me I would delegate the authority to finish that up and send it out to the Executive Committee myself.
MS. BERNSTEIN: -- if I understood what conclusion was reached on the tone of this letter so that I could actually draft it that way. I want to reflect properly what the committee's intentions are in that letter. If somebody thinks they can summarize --
MS. GREENBERG: We have enough -- we have a quorum here if the committee wanted to pass the HIPAA report with the agreement that it will, you know, basically include the content that includes the -- maybe be tightened up a bit and some of -- but nothing new that needed to be voted on separately and then referred to the Executive Subcommittee to finalize and -- or that would be one approach or have the Executive Subcommittee finalize and then have a conference call, an open conference call in which it is approved.
DR. STEUERLE: My motion is for the first.
MS. GREENBERG: For the first. Okay. That is a motion on the floor.
DR. COHN: Well, I think Maya is obviously asking what the tone of the letter is and I guess this is an issue that I have to look at Larry and I don't know if he has had -- I guess you actually have reviewed the whole letter a couple of times now. I will tell you that I have -- I don't think that I share necessarily your perspective on the HIPAA implementation, but then, of course, I also had different expectations of the implementation because I considered it to be foundational to next steps and not necessarily solving all aspects and I think we both have parents involved with health care and I don't think -- I would agree with you. I don't think that the HIPAA administrative simplification has certainly solved that.
The question is is, of course, how others feel in terms of the tone and how they want to frame it. Larry, I don't know if you want to comment.
DR. VIGILANTE: My own view is close to Mark's, which is that, you know, if we really want to evaluate what HIPAA has achieved, we need to actually go through a process that evaluates what was achieved through a formal data gathering process and write something that is based on evidence that we have heard from the field.
I think that a letter that talks about what has happened in a descriptive way but does not necessarily place a value on what has happened is probably at this point the appropriate measured response. I think that there are -- is there room for lessons learned to allude to the fact that a great deal of progress -- that a great deal remains to be done and that we haven't achieved the vision yet. So, I think there are ways of sort of caveating this diplomatically that can perhaps achieve some middle road and I would be comfortable with the Executive Committee sort of hammering that out.
DR. CARR: I would like to -- I liked the way Jeff put it. I think the letter needs a point of view and that the idea of saying this was the first step, moving into the electronic already implies that no one is claiming victory, but saying as a first step how important it was and where we are sort of on the journey.
So, I think the letter needs a point of view and I don't quite get that from that. I think the elements are there, but telling the story as Jeff began I thought was very helpful.
DR. COHN: we have a motion to approve with work to be done to further modify and by the Executive Committee is I think what I am hearing. Obviously, the Executive Committee would at its discretion if the topics moved far off what we have now to include this include this in a conference call of the full committee, but recognizing that we will probably be as we have just been describing. I think that is what you are suggesting now.
Is there a second on this one? Mark?
MR. ROTHSTEIN: I second the motion.
DR. COHN: Okay. Further discussion?
All in favor, aye?
[There was a chorus of "ayes."]
Opposed?
[There was one "nay."]
Okay. Jeff, did you oppose?
MR. BLAIR: Yes.
DR. COHN: Okay.
MS. BERNSTEIN: The motion carries.
DR. COHN: Anyone on the phone wish to vote? And, Jeff, you are opposed to referring this to the Executive Committee?
MR. BLAIR: It is okay. My feeling is that I don't feel like -- and part of it is me. You know, obviously, I haven't read the letter. So, I am, you know, at a -- it is not really appropriate for me to make a stand. My feeling is that I am not sure we have reached consensus on what we really want the letter to say, what the message is and, therefore, how we would craft it. However, there just was a vote and the vote was to put it to the Executive Committee and I will support that and maybe the Executive Committee will be able to try to pull it closer to consensus and, you know, so let's just go down that path.
MR. ROTHSTEIN: May I just comment briefly? This may be helpful to Maya. I think what the letter can say especially in the lessons learned is to have a sort of focused evaluation of discrete things that we have studied and what we have learned about what has worked and what hasn't worked. In my judgment and I think I hear some support for this view, what we ought to avoid is sort of sweeping statements about whether HIPAA has been a success or a failure and the reason for that notwithstanding the sort of the practical arguments that I made earlier, is that we would have to go back and actually study the legislative history of HIPAA and particularly the administrative simplification provision to know what the goals were to see whether they were achieved.
I think there have been many goals that have been ascribed to administrative simplification that in my judgment were never contemplated by Congress and that it was a sort of a narrow goal and even narrower view of what privacy needed to accompany the administrative simplification and if we view this as sort of this field that is supposed to -- or law that is supposed to restructure the health care system and make it work and have privacy for everybody at the same time, of course, that is not the result. So, in other words not to avoid drawing conclusions in the letter, but to draw narrow conclusions based on the kinds of issues that we have studied and that have been parts of the recommendations that we have made to the Secretary over the last several years.
DR. COHN: Certainly, the Executive Committee does reserve the right to bring this back to the full committee for review if there are sort of any issues that surface. But it will obviously be turned over to the Executive Committee for work. You will I am sure all receive copies of versions as we work on it. I think we just want to make sure that everybody is providing appropriate input and feels that they are part of the process.
MS. BERNSTEIN: Notwithstanding, I did promise yesterday to circulate electronically the letter to everyone on the committee and the staff. So, before I start rewriting and get it to the Executive Subcommittee, if anyone does to weigh in specifically on their part, please feel free to do so.
MR. BLAIR: And actually I would feel happier if the position that I took would be represented as abstaining rather than opposing.
DR. COHN: So noted.
DR. STEUERLE: I didn't mean that going to the Executive Committee that it would not send a copy to you
or --
DR. COHN: Jeff is on the Executive Subcommittee.
The good news is that I saw on the calendar we actually had to 12:30 to adjourn. So, I am not as late as I thought.
Now, I am going to basically defer to termination on this final issue, which is that letter from Standards and Security for them to do further deliberation on it, as well as obviously Executive Subcommittee to do the HIPAA for the work on the HIPAA letter and see if it is appropriate or necessary for us to have an open conference call between now and June. So, we will not decide that at this moment.
Now, there is an issue that has to do with the 2005-2006 NCVHS Biennial Report.
Agenda Item: Discuss Issues for 2005-2006 NCVHS Biennial Report
Marjorie, did you want to talk about that briefly?
MS. GREENBERG: Very briefly. I know I am between you and your flights and lunch and everything else.
Just to say that the -- for new members, we did for many, many years do an annual report. We now do a biennial report. This is a report on the entire committee. Again, it doesn't typically break new ground, but it is archival and also should be interesting, hopefully, if you are interested in the committee.
The last report was the 2003-2004. So, now we are wanting to really get started on the 2005-2006. Susan Kanan, who is a committee writer, will take the lead on it. I think that it refers to the HIPAA report, but, of course, it includes all the subcommittees, et cetera. What I would ask is that everyone and particularly the new members look at the last one, the 2003-2004 report because in this case now we are starting. So, we are not quite mid-stream the way we were or close to the end with the HIPAA report. Send me and Simon any suggestions on how -- you know, if you think the whole thing should be restructured or you think the current structure will work, et cetera.
So that our current plan would be to do a 2005-2006 report that would basically follow the general format of the 2003-2004 report, but the Executive Subcommittee is meeting and will have done some more strategic planning in 2005-2006 than we had done in the previous years. So, we may want to -- you know, there may be some areas that we want to emphasize. We will have a forward by the chair, which can always -- generally be more expansive or more philosophical or doesn't have to -- I mean, it can't say in it and there should be a unique identifier, but, you know, it is an opportunity for reflection on the chair that isn't quite as limiting as some of our other work is.
Let us know. I would like -- Susan, I think is -- we need to get her started on it and so I would like to have your approval to just -- that she can contact the individual chairs of the subcommittees and the chair of the full committee to start, you know, putting it together and at least the foundation of it and the nuts and bolts of it. But this is an opportunity to also give us input if you think it should take -- it needs to basically summarize what we have done but if you think it needs something else or should take a different structure.
We have tried I think in the last few years to make it more cross cutting and less just subcommittee, subcommittee, subcommittee, workgroup. I think that has been good. So, I just put that on the table and I would welcome any of your comments. I guess our goal would be to have a draft reviewed at the June meeting probably but maybe not approved until the September meeting. Does that sound reasonable?
DR. COHN: Sounds good.
Agenda Item: Subcommittee and Workgroup -- Additional Updates
Now into subcommittee and workgroup reviews. Obviously, we had a number of them cancelled this time. So, you know the NHII workgroup will have a conference call to further discuss next steps.
Executive Subcommittee is having a meeting in May to talk about further activities. I am also charging a small workgroup, really a planning group, which will be composed of Jeff Blair, Mark Rothstein, Justine Carr and Harry Reynolds to work with me around issues related to secondary uses of data, which may come forward as another ad hoc workgroup activity. But we will be talking more about that as we know a little more and sort of work on that issue.
Since Justine is actually the only group, one that actually had a meeting, which was a conference call, if you want to just briefly discuss any conclusions from that, I would certainly offer you that opportunity.
DR. CARR: Thanks, Simon. I want to thank the great turnout at 8 o'clock this morning on the phone. We had Mark Overhage, Garland, Carol, Bill Scanlon, Larry Green, Kevin Vigilante, Marjorie, Debbie, Michael Latt(?), Marybeth Farquhar, John Waits(?) and Michael Fitzmaurice. So, quite an impressive group.
Just very rich, based on that. So, our goal was to discuss our plans for a hearing as were outlined in our meeting earlier in January with Callan(?) Clancy. Just briefly our national agenda as we know is to implement a full electronic health record by 2014 and it is assumed that the electronic health record will improve the breadth and efficiency of quality reporting. However, current quality reporting initiatives rely on administrative data and data extraction from the medical record or both.
Between 2007 and 2014, quality measures will rely on a blend of administrative data and electronic medical record data. The Quality Workgroup is planning to hold hearings to identify how this blend of administrative and electronic data is currently being used for quality assessment and will seek testimony on current state successes and challenges and how it should be developed and improved over time.
At the end of the testimony, we should have some indication as to what it takes to use administrative data and we will be asking each testifier to present their use cases, what did it take to do it, how did it have an impact on quality, what did it lead you to do, what are you planning to do next.
So, we actually got some great ideas and some suggestions of some I think wonderful folks to testify. So, next step will be to complete that list of people who could testify. We probably might even invite written testimony even if we don't have people come to speak. So, we will be looking into their logistics of date and time.
DR. COHN: Justine, thank you.
Mark, do you want to make any comments about plans for Privacy?
MR. ROTHSTEIN: Yes, very briefly. We are going to send out an e-mail to all the members of the subcommittee and try to get some dates for first an April hearing on a topic to be named and also a series of conference calls to talk about our two letters that are in the pipeline, the FIRPA letter and the covered entities letter. So, we are going to have to do it remotely until our next face-to-face meeting, which probably will be at the hearing in April.
DR. COHN: Harry and Jeff.
MR. REYNOLDS: I will just make a quick update. Thanks for agreeing to our letter yesterday. We have got the one letter to work on that you saw. We obviously have to keep an eye on NPI the rest of the year. We have hearings scheduled in May and October. You heard Karen bring up the security discussion yesterday, which we will need to include. We have put down a complete list of the things we feel we should focus on the rest of this year and forward. So, we will be finalizing what is going to be in our May hearing but that is kind of where we are right now.
Then this ad hoc effort, kind of like NHIN, whether or not -- what portion of our committee it does or doesn't pull into that effort to look at.
DR. COHN: Jeff, did you have any comments?
MR. BLAIR: No additional comments.
DR. COHN: I try to make sure that the planes run on time and we are actually just at 12:30. I do however always at the end of meetings I like to ask members -- I mean I thought this has been a very interesting meeting. I really want to thank the new members for providing I think some fresh insights. I think that is always, as Marjorie commented, why we have members rotate off and new members come on.
At the end of the session I always sort of like to ask people just for brief views of what worked at this meeting, what didn't. We obviously will try to avoid having snow storms at future meetings, but, obviously, that is -- heat in the room, okay. We will work on heat in the room.
DR. FRANCIS: They finally managed to make a machine work. I gather you said it wasn't working.
MS. BERNSTEIN: I had to get fingerprinted twice on Friday and then I was told that the machine was going in for maintenance essentially and they would call me when it was done. So, I am surprised that they called you for fingerprinting.
DR. COHN: Any comments from any of the members about how we can make these meetings better or more interesting, more compelling?
Okay. Well, in that case the meeting is adjourned and thank you all for your participation.
[Whereupon, at 12:35 p.m., the meeting was concluded.]